Learn about cystic fibrosis, a genetic disorder that affects the lungs, pancreas, and other organs, and how to treat and live with this chronic disease.
CF is a rare genetic disease found in about 30,000 people in the U.S. If you have CF or are considering testing for it, knowing about the role of genetics in CF can help you make informed decisions about your health care.
If you or your child has just been diagnosed with cystic fibrosis, or your doctor has recommended testing for CF, you may have many questions.
Diagnosing CF is a multistep process. A complete diagnostic evaluation should include a newborn screening, a sweat chloride test, a genetic or carrier test, and a clinical evaluation at a CF Foundation-accredited care center.
Raising a child with cystic fibrosis can bring up many questions because CF affects many aspects of your child’s life. Here you’ll find resources to help you manage your child’s daily needs and find the best possible CF care.
Living with cystic fibrosis comes with many challenges, including medical, social, and financial. By learning more about how you can manage your disease every day, you can ultimately help find a balance between your busy lifestyle and your CF care.
People with CF are living longer, healthier lives than ever before. As an adult with CF, you may reach key milestones you might not have considered. Planning for these life events requires careful thought as you make decisions that may impact your life.
People with cystic fibrosis are living longer and more fulfilling lives, thanks in part to specialized CF care and a range of treatment options.
Cystic Fibrosis Foundation-accredited care centers provide expert care and specialized disease management to people living with cystic fibrosis.
We provide funding for and accredit more than 120 care centers and 53 affiliate programs nationwide. The high quality of specialized care available throughout the care center network has led to the improved length and quality of life for people with CF.
The Cystic Fibrosis Foundation provides standard care guidelines based on the latest research, medical evidence, and consultation with experts on best practices.
As a clinician, you’re critical in helping people with CF maintain their quality of life. We’re committed to helping you partner with patients and their families by providing resources you can use to improve and continue to provide high-quality care.
As part of the Cystic Fibrosis Foundation's mission to help improve the lives of people living with cystic fibrosis, the PSDC initiative taps the CF community to inform key efforts to support the management of daily care.
Your cystic fibrosis care team includes a group of CF health care professionals who partner with you to provide specialized, comprehensive CF care.
Many people living with cystic fibrosis and their families face complicated issues related to getting the care they need. Cystic Fibrosis Foundation Compass makes sure that no one has to do it alone.
CF Foundation Compass is a service that helps people with CF and their families with navigating insurance options, connecting to legal information and experts, finding available financial resources, and tackling other life issues.
CF care team members are paramount in providing highly specialized care to people living with CF. CF Foundation Compass can help by serving as a strategic ally for care teams, so team members can focus on their patients’ care.
CF Foundation Compass can help you navigate insurance, financial, legal, and other issues you are facing. Use this online form to start your conversation with a Compass case manager today.
The Cystic Fibrosis Foundation is the world’s leader in the search for a cure for CF and supports a broad range of research initiatives to tackle the disease from all angles.
The CF Foundation offers a number of resources for learning about clinical trials and treatments that are being developed to improve the treatment of cystic fibrosis.
Our understanding of CF continues to evolve as scientists study what causes the disease and how it affects the body. These insights drive the development of new and better treatments and bring us one step closer to a cure.
Researchers, supported by the CF Foundation, have made tremendous advances to improve the health and quality of life of people with CF. We are committed to providing the tools and resources you need to continuously build upon this work.
In some special cases, you or your child may be able to stay on an investigational treatment once the trial is over.
If you or your child are participating in an early phase of a clinical trial, you likely will not be allowed to continue the treatment being tested. Researchers will need to analyze the study results to ensure that the treatment is safe, effective, and better than current treatments. It would not make sense to continue the potential treatment until this process can be completed.
Some clinical trials do have what is called an open-label extension study, which means the doctors and participants know what treatment is being provided. This study typically occurs after a Phase 3 clinical trial of a new treatment. Participants are invited to enroll, so that additional safety information can be gathered about long-term use while the U.S. Food and Drug Administration (FDA) reviews the treatment for approval.
The study sponsor can provide expanded access (sometimes called compassionate use) to a new treatment to patients with serious or life-threatening conditions who do not meet the enrollment criteria for the clinical trial. FDA regulations allow manufacturers to provide the drug as long as it does not pose unreasonable risks to the patients, and the patients do not have any other options.
Some cystic fibrosis clinical trials test drugs that the FDA already has approved for another use. If the FDA has already approved the drug, then your CF doctor can prescribe it to you after your participation in the trial has ended.
The Cystic Fibrosis Foundation maintains a robust pipeline of therapies that target CF from every angle. The progress of these therapies can be tracked by using our interactive Drug Development Pipeline tool.
The pipeline shows each major category of therapies that the Foundation has helped either financially or through clinical trials within the Therapeutics Development Network. Although the pipeline is not a comprehensive list of CF therapies in clinical trials, it provides a snapshot of the therapeutic areas that the Foundation is pursuing.
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